Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, February 2, 1993 TAG: 9302020126
SECTION: EXTRA PAGE: 3 EDITION: METRO
SOURCE: Jane Brody
DATELINE: LENGTH: Long
UNCERTAINTY, CONFUSION HAMPER THE RIGHTS OF A DYING PATIENT
The story is one that is echoed daily in hospitals and nursing homes throughout the country.As Nancy Neveloff Dubler, a bioethicist at Montefiore Medical Center in the Bronx, tells it, the patient was an 83-year-old former piano teacher with diabetes who had lost one leg, was blind in one eye and nearly blind in the other and had such severe arthritis that he could no longer play the piano. He was confined to his home in a wheelchair, aided by a 24-hour home attendant and visiting nurses.
One day he developed difficulty breathing. He was hospitalized in intensive care and placed on a ventilator and kidney machine to counter "multiple organ failure." The attending physician gave him less than a 1 percent chance of recovering enough to leave the hospital.
More often than not, mechanical support of a life like his would be continued until the body refused to respond any longer. It could take weeks or months before death forced an end to life support, at great cost emotionally, physically and economically to all concerned.
But this case had a different ending. Although he was in and out of consciousness, his nurses reported that whenever he was lucid, he mouthed the words "enough" and "I want to die."
His daughter told the hospital about the living will he had executed a year earlier and suggested that the time had come to follow its directives: allow him to die with dignity, without further treatment.
After more than a week of negotiating, a decision was finally made to sedate the patient with morphine and turn off his respirator. He died eight hours later.
The decision took far longer than the patient might have wished. And even when a decision was made to follow his written and oral wishes, the nurses caring for him at first resisted disconnecting his respirator, choosing instead to stop kidney dialysis.
Families as well as patients are often furious and frustrated with what they consider a lack of compassion in medicine's insistence upon prolonging a life that no longer seems worth living.
Why do hospitals repeatedly deny the right of a dying patient (or that patient's surrogate) to refuse care, a right that in the last 15 years has been affirmed by major professional groups, state and federal laws and myriad court decisions?
The answer, say those who have closely examined this question, is that changing behavior is far harder than changing beliefs. In addition, a vast sea of uncertainty, confusion and, in many cases, outright ignorance surrounds the issue of a dying patient's right to refuse treatment.
People who are allowed to die at home are less likely to become caught in the web of life-sustaining technology. But for those already in a hospital or nursing home, a better understanding of the factors that deter pulling the plug can help ease the way both for patients and families and for those who serve them.
\ Medical Resistance
Most doctors and nurses have had no lessons in dying. Their training, their entire raison d'etre, revolves around rescuing patients from death.
"Removing life supports and permitting death is traumatic for some care givers and alien to all," said Dubler. "It demands a re-examination of the goals of care, an admission of the failure of medical science to forestall mortality and an elevation of the patient's autonomy and legal right to refuse treatment over care givers' notions of beneficence."
According to the findings of a large survey described in the January issue of The American Journal of Public Health, most doctors believe that a dying patient should be allowed to refuse care and should be given adequate pain relief, but far fewer act on those beliefs.
Far more often than they knew they should, the doctors surveyed said, they overtreated dying patients with life-prolonging measures and inadequately treated their pain.
Nurses, too, whose education emphasizes issues like patient comfort and choice, may find it difficult to give up on the dying even when the dying have given up on themselves.
Nurses often fear that failure to treat will be interpreted as abandonment of the patient, and nurses as well as doctors may need to be reassured repeatedly by the patient or family that hand-holding and kind words are all that is expected and desired.
\ Misunderstanding
Even when the spirit is willing, doctors, nurses and the institutions they work in may have inhibiting misconceptions about existing guidelines, laws and legal liability associated with not treating the terminally ill.
For example, the survey showed that many professionals think that the permission to withhold or withdraw treatment applies only to so-called heroic measures, like cardiopulmonary resuscitation, and not to "ordinary" measures like feeding the patient through a tube.
As a result, families are often told incorrectly that they must go to court and sue the institution to have a patient's feeding tube or intravenous fluids stopped. Instead, families should urge the institution to consult the existing laws and guidelines.
Health professionals also tend to distinguish between not starting life-sustaining measures and withdrawing measures already in place. Even with regulations staunchly behind the doctor, it is far harder to pull the plug than not to plug it in to begin with.
Families who understand this reluctance can be forthright in their discussions with doctors, acknowledging their sensitivities and condoning their hesitation but also making it clear that pulling the plug is acceptable. New York Times
\ AUTHOR Jane Brody writes about health issues for The New York Times.